@xebex Our son's journey to getting better was a long one and although I think there are some things I learned along the way, I am not sure it is all explainable. Sorry for the long explanation, but I think it was a process that led him (us) down this road.
He was diagnosed with "Atypical Migraines" in 7th grade. He awoke with severe headaches, visual field loss and brain fog and returned to bed to sleep into the afternoon. He had strings of days (27 in a row once) where he was not functional. He also had strings of days where he was functional, but only completed one year of school from 7th -12th grade. He was better in the summer and was able to play baseball until the year he went for ME/CFS treatment.
In the 4th year of chasing the migraines, we went to a headache specialist in Michigan who was the first to say that this didn't appear to be a primary migraine problem. She felt it was primarily an energy problem. That led us down the road of looking for answers and we came across ME/CFS. After looking at medical "position papers" and calling every doctor listed as an author, we were able to get in to see Dr Lerner quickly.
Dr. Lerner confirmed the diagnosis of ME/CFS and pursued anti-viral treatment. Of course there were insurance issues, delays and battles. Second opinions and more, but eventually we settled on a Course of IV infusions with Cidofovir every two weeks and oral antivirals in between for 12 weeks. We waited until he was 18 years old so he could choose to pursue this himself (we did not want another Justina Pelletier fiasco).
It was apparent after the first infusion, that he was having a different response than he had with prior treatments. Most importantly his brain fog was lifting and he was able to engage in conversations. Dr Lerner pretty much forbid him from exercising so during this time, he gained 30-40 lbs.
After completing the IV infusions we continued with oral antivirals for another 6-8 weeks but he started to wear down and we felt he needed a break. So from that point on, we focused on Rehab/Recovery and making gradual steps. He started to go to college, but failed the traditional route. He switched to a Junior College and found more success. He started a part time job pulling parts in a warehouse. Started to watch more what he ate (balanced diet). Eventually he was able to do traditional college studies and worked himself up to loading trucks in a warehouse. This whole Rehab/Recovery process took 3 years.
Today, he is 3 credit hours from a Bachelor degree in Exercise science (hard finding a internship with COVID!) and he starts Nursing School in March. He has returned to loading trucks in the warehouse as he loves the physical challenge and does better as part of a team. He also recently got married. Not sure where the future is leading completely, but we are so thankful for where he is. We know it is not common to have this type of recovery with ME/CFS.
Hope that was informative and also encouraging. Definitely part of his wanting to go into Nursing is to pay it back. We would all say that we take life less for granted than we did before ME/CFS.